Thursday, March 17, 2011

Another miracle

Sooo... I know I take FOREVER to post, and have only posted a few things since July, AND those things have all been about a crisis with Jett, but hopefully that is now all behind us! This is long, but it tells about our miracle. Mason was very sick Jan. 21, his birthday. He was diagnosed as having an asthmatic reaction to a virus, and I remember specifically asking the doctor if he had RSV, and I was told no. He came home from the doctor that day with a nebulizer and a bunch of antibiotics, and I was given the impression that Mason may develop asthma, but he was still too young to be diagnosed with it. So, I thought his reaction to the virus was exclusive to him.  
Here he is feeling miserable as he opens his birthday presents... not quite the reaction I envisioned when we gave him a train table and trains! Poor kid!

Tage and Jett started getting sick about the same time. Jett's nose started running Tuesday, the 25th, and then Wednesday he had a little cough and was not eating well. Wednesday afternoon it started to snow. A lot. I don't normally get nervous about my kids getting sick, but this time I was a little. I even said to Kevin that evening that all the snow made me nervous with Jett being sick. That night I slept maybe an hour. I was up all night holding Jett, keeping an eye on him. He wouldn't eat at all. I could tell breathing was a little tough for him, but I thought it was just his snotty nose. At 2am I fed him a few tablespoons of milk with a syringe, and that made me feel a little better. All I was really worried about at the time was dehydration. Thursday morning I got ready to go to the doctor for "early walk-in hours" at 8am, but didn't go because they weren't open yet because of the snow. I was able to get him to eat a little more, and that calmed me down, and I thought he was on the mend. Around 11:30am though, Kevin and I decided I would take Jett to the doctor (now open) just in case.

1:30pm, we saw the doctor. Jett was in just his diaper, and the doctor came in, took one look at him and said "You need to take him to the ER. Stat." Then he listened to his lungs and said "Yes. Go immediately. I will call them to let them know you are coming. Go right away. Don't wait. Do you have a car? Go. Now." I was SHOCKED! I really didn't expect that, and yet, I did. You see, at lunch I ate an extra big one, just in case. And I took a snack for myself... just in case. But really, I didn't think he was that bad! And I definitely didn't expect RSV, I thought he might need to be treated for dehydration and that was it.

We got to the ER and only had to wait a few minutes, before someone came down and escorted us to the Pediatric ER unit, which just opened a few months ago. Jett's temperature was 104 rectally (I had not received that high of a reading at home, although I did not do it rectally). The doctor ordered an RSV test, which we all know came back positive. Then he ordered an x-ray of his chest. At that point, on a whim (aka INSPIRATION!), I brought up the possibility of him having enterocolitis- an infection in his colon, which he is at risk for from having Hirschsprung's Disease. The doctor said it was unlikely (I knew that, he didn't really have symptoms of it, and just had symptoms of Respiratory junk) but said he would order an x-ray of his abdomen as well since it could fit on one x-ray.

When the x-rays came back, Jett received an additional diagnosis of Pneumonia. The doctor was trying to decide if Jett should be discharged, or if they should keep him overnight "just in case." But the x-rays also showed signs of obstruction in his intestines, dilation, and air, so  the ER doctor consulted with Jett's surgeons at the University of Maryland, and it was determined that Jett needed to be transferred there, where the surgeons could evaluate the issue going on in this bowels.  Plus, they have a Pediatric ICU, which Frederick does not... just in case.

Kevin drove down to the hospital with Tage and Mason before we left to give me some snacks, clothes, and other necessities. Poor Tage was so sick at the time. I felt so bad for not being able to be there for her, and at the time I thought it was best that Kevin stay with her and Mason while I went with Jett to Baltimore.

I rode shot gun in the ambulance and had some good conversations with the driver on the way down. Jett slept the whole way, except for one time when his IV blew and the paramedics had to remove it. I hated being up front, looking back through a small gap, hearing Jett cry, his monitor beeping, and the paramedics working and asking each other for various pieces of equipment, and not be able to know immediately what was happening, or be next to him to try and soothe him. The incident was really only a few minutes, and after one minute one of the paramedics hollered up to me that it was just his IV.
This was day 2 at the hospital. He looked and felt miserable. Notice his head bandages? IV. Can you see the little plastic medicine cup that the nurse cut in half and put on the IV in an attempt to protect it from being bumped and knocked out? We all tried to protect that IV with our lives! IV's and Jett do not mix!

The UMMC was chaos from the moment we got there. Jett was put in a room and nurses started doing an IV and blood work, oxygen, etc. It was very crowded. Soon after we arrived, the Resident Surgeon came in to see Jett. By now, his stomach was extremely distended. The surgeon jumped the gun a little and in listing things that could be wrong with Jett included the possibility of needing a 2nd pull-through surgery done. I remember leaning on Jett's bed and saying "ARE YOU SERIOUS?" He said we don't know for sure, but it is a possibility and then ordered another x-ray.

Unfortunately, Jett is an extremely difficult stick. The best of the best had a difficult time getting an IV. This results in Jett being stuck a million times, and lots and lots of crying. And then... The crying stopped. The poking did not. Since we had arrived, breathing had become increasingly difficult for him, and he had become very lethargic. Jett was switched from a nasal cannula to the VapoTherm, and was on the highest level of pushed air and oxygen that he could be on before needing to be put on a ventilator. The nurses said they were worried that he had a blood infection, and that is why he was so lethargic. He was then transferred to the ICU (he was in intermediate care before). I went into the bathroom and cried. I couldn't help it. I'm usually able to hold myself together but when I stepped into that bathroom it all came out without me being able to hold it in. I was running off of about 1 hour of sleep from the night before, and extremely poor sleep for the week prior with Mason being so sick. I cried for a few minutes and then left the little meltdown in the bathroom, came out, and followed Jett down to the ICU.

Things settled down in the ICU, the only thing he had to have done there was an irrigation of his colon and he slept. At this point, I was truly terrified that Jett might not survive. I tried to get comfortable on a small, hard chair, and I slept for a few minutes. I never fell into a very deep, restful sleep, but I remember waking up and realizing that I had dreamed about Jett as a little boy. I woke up feeling calm and filled with faith that he would be okay.

The test results were negative for a blood infection, so he did not need a transfusion, and because Jett wasn't desatting anymore he was allowed to move back into a room in Intermediate care (but still under ICU status) at 4am. We got settled there and around 5am I fell asleep, in a much more comfortable recliner. And then the surgeons rounded at 6am. Dr. Strauch (Jett's surgeon who did his pull-through) was there and brought with him some optimism. He always looks me in the eyes and says "We are going to take good care of him. He is going to be okay. He will get better." He says it in such a confident, believable way, and it is so comforting to me. His assessment of Jett was good, his stomach was getting smaller and his belly was soft, not hard (hard would be baaaad). The previous night he had put him on Flagyl, an antibiotic for the colon... just in case he did have enterocolitis.

Kevin came and we spent the day talking to nurses, doctors, and anxiously watching Jett's monitors. The days all kind of blur together for me now, but none were as crazy as the first night. I could not believe how quickly Jett had gone down hill. It was such a blessing that he was already in Baltimore, where he needed to be, before he became critical. Otherwise, the situation would have been much worse and I'm positive we would have been transferred by ambulance with sirens, or helicopter. The whole day was guided by the Lord. I took him to the pediatrition... just incase. I ate an extra big lunch... just in case. I suggested enterocolitis...just in case. The doctor transferred us to Baltimore... just in case. Jett was put on Flagyl... just incase. All things that got him the care he needed, exactly when he needed it. It was amazing.

While Jett was in the hospital, he had at least 20 different IV attempts and that doesn't count all the blood draws he had to have! He had an IV in his arms, hands, feet, head, and (gasp) neck. Not cool. I hated every second of IV and blood sticks.

One day, an incident occured that was particularly shocking to me. I realized that even a 3 month old REMEMBERS, and REACTS strongly to negative situations. Jett's vapotherm tube (goes in his nose) had come out, and so had his NG tube (goes up his nose and into his stomach). The nurse went to put the vapotherm back in his nose and as he (male nurse) came close to his face, Jett held his breath, started grunting, crying, and flapping his arms at the tube. The nurse pulled back, let Jett calm down, and then tried again. Same thing happened... held breath, grunted, cried, flapped arms at tube. The nurse pulled back, and let him calm down and tried again. SAME thing happened. Only this time the nurse just dodged Jett's arms and put it in anyways. I was so amazed at how strongly Jett had reacted to the situation. He KNEW something was about to happen that he did not like, and he tried to do something about it. Sad.

This picture was also taken on Day 2. It was so hard because we didn't know what day Jett was on with the virus, and so we didn't know if the worst part was still to come. Luckily, that day and the previous night were the worst, and it was just a slow downhill battle from there.
Right after that incident, the nurse tried to put the NG tube back in his nose. He put it down, and Jett started gagging. The nurse kept going, and had it all the way in, but Jett did not stop gagging. In fact, his monitors started alarming because he was not breathing. The nurse quickly pulled it out and it was decided that for the night he did not need his NG tube. Jett did not want to be messed with that night!

Another thing I really didn't like was Respiratory Therapy. It was very necessary, but not cool. The therapist would do deep suctions up is nose and down his throat, and then also just through his mouth and down his throat. You wouldn't believe the junk they would pull out of Jett! It was gross. When Jett started getting a lot of mucus in his mouth and nose and was blowing bubbles with it, I would grab the suction and suck it up just at his lips or at his nostril... man, sometimes I wish I had one of those things at home! They are powerful! It would be useful for Mason's constant runny nose when he is sick, or even mine! I really want one... bummer.

The rest of Jett's hospital stay just felt so long. He was there for 8 days, and I never once left. I did leave the floor two times to buy some food, and I went to a "Family Room" multiple times a day to access some food we had put in the fridge there. Otherwise I was always right next to Jett.

There was also a day that it took an hour and a half to get like 1ml of blood from Jett. Looking back now, I wish after the first 20 minutes I would have had a hissy fit and said ENOUGH! It was so ridiculous. It was also at 4am. at about 5:40am I finally got Jett back to sleep, only to have the surgeons start rounding on him at 6am! Every 20 minutes after that, someone was coming in to listen to his lungs and do their assessment on him, and each time I would get him back to sleep and it would happen all over again. The little guy was SOOO exhausted! Unfortunately the next person that came in the room at 7:30am was the main Doc and I just started laughing, because I wanted to cry (I myself was also very tired!) He inquired as to why I was laughing and I tried to say nevermind, but he persisted and I told him about the 1.5hour blood stick and the constant interruptions and he said he'd come back later and let Jett sleep. He could see that Jett's stats were all okay on the monitors and he was no longer critical (this was about day 6 of his hospital stay).

It was such a relief to be transferred to the Pediatric unit on Day 7. Jett was able to have his oxygen removed that night, he was nursing again, he had no tubes and no IVs, and we also had our own room.

That evening Jett's surgeon stopped by. It was funny, because he said he was kind of there on a social visit, and I thought "Oh? You want to chat it up with me? Weird." but really he was there to talk about Jett, his RSV, his Hirschsprungs, and Jett's next office visit. So by social, he meant "unofficial medical talk." He looked at Jett and said "He looks SO much better than he did those first few days. The first two days were pretty scary, he was really walking a fine line between needing to be intubated. I am so glad he is doing so much better." When you have a doctor say something like that, you realize even more the dire situation you were in. Doctors don't always open up like that, saying it was very scary and they were worried. He also said that we'll never know if Jett would have developed eneterocolitis, but that it was better safe than sorry to give him antibiotics to treat it. When you get sick, your digestive system slows down, which in Jett's case puts him at a higher risk for developing enterocolitis when he is ill.

The next morning, the doctors rounded on Jett at 7am. and when they finally got to the part about being discharged, I had a hard time fighting back tears, I was just so happy that once again, we would really be taking Jett home. You can bet I said a prayer of gratitude. Our ordeal was over and we could be reunited as a family again.

Saturday, January 29, 2011

Jett's a FIGHTER

Jett is very sick and is back in Baltimore in the ICU. We took him to the ER in Frederick on Thursday and were transferred a few hours later down to the University of Maryland. He has RSV and Pneumonia. He is such a tough guy, and has been through soooo much! He is doing a little better but still struggles to breathe. He's a fighter though and will pull though!

GO JETT! I'm so sorry I let you get sick...I love you!

Sunday, January 16, 2011

The First Two Weeks: Part Three

So, where was I?

Friday, Saturday, and Sunday were very much the same. Jett still had the silly straw in his mouth, continually suctioning bile out of his stomach and an IV in his hand. His skin was still rough, but was improving and all the nurses were commenting on how great it looked.
Saturday night, at our house, I was taking a shower at 10pm and looking forward to going to sleep. We had been at the hospital all day and both Kevin and I were exhausted. As I get out of the shower, I can hear Kevin talking on the phone. As I listen, I realize it is the hospital and I panic momentairly. A call from the hospital at 10pm at night is unusual especially since everything was okay with Jett just a few hours before. After a few minutes Kevin interrupted the caller and said "I understand, I feel it was explained to us very well already... can you please tell me the purpose of this call?" Turns out, it was the Resident Surgeon who was calling to get our permission for Jett's surgery that was happening on Monday. Why she thought 10pm at night would be a good time to call, when we had spent the entire day at the hospital where they could have easily reached us, or could have called the next day... I don't know. They've obviously never had a baby in the NICU. I understand that she is a Resident, and is still learning and making mistakes... but common sense says you don't call at 10PM when the parent's baby is in the hospital! We told our nurse about it the next day, and she apologized and started to try to make an excuse for the resident, trying to smooth it over (we weren't angry, we just were retelling our experience to the nurse), but then she stopped her self because she couldn't think of a legit reason for the resident to have called at that hour, and she said "there's really no excuse for that. I am so sorry." It was okay. Kevin's heart attack was only minor.
Sunday afternoon we finally got a call from the Ronald McDonald House, saying they had a room for us. We took a break from holding Jett to go move into our room.

The RMH was amazing! I was blown away at how nice and accomadating it was. It is a gem, unlike most of the rest of Baltimore! It was so shiny there! UMMC: not so shiny. Good thing the superior nurses and doctors there made up for the ancient grungy building Jett had been sent to! Breakfast and Dinner were provided by volunteers, during which we ate with other families staying there. It was incredible to meet people and hear their stories. Everyone was so kind, and the children were so brave...

Then Monday came. Oh boy. We left the RMH early so we could be with Jett as much as possible. We followed the nurse and Jett down to surgery around 10:30am. We sat with him until about 11am when the surgical team was ready and they wheeled Jett down the hall, to the O.R. While I had faith that he was going to be okay I still found myself saying a silently praying that he would be coming back to me in a few hours. I began to cry, and once again a nurse handed me a box of TEENSY tissues, saying "It's a tissue kind of a day..." Yes. Yes it was.

We recieved several updates while we waited for the surgery to be over. They didn't really get started on the actual surgery until about 12:20 and completed around 1:30pm. During those 2 1/2 hours I did a lot of praying and reflecting on our Savior. A few days before, Chad (Kevin's brother) came to help Kevin give Jett a blessing. In the blessing, Jett was told that all medical staff attending to his care and needs were being led by the spirit and that the Lord would be doing His work through them. He was blessed that in time he would be discharged from the hospital and go home to be with his family. It was such a comfort to me to hear these words. I was grateful too, for my knowledge of The Plan of Happiness.

Jett right after surgery

Jett had 5-6in removed from his colon, and the "good" colon was reattached to him. The surgery had gone as expected and we were allowed to go see him. It was such a relief to see him again! He was still waking up, and was pretty swollen from the fluids. His expression made us chuckle though... he was just soooo cute, laying there arms spread out and mouth open, staring at us... trying to keep his little peepers open. Such a sweetie. It was such a relief to have the surgery over with.

We didn't hold him the rest of the day, we just wanted him to rest. It took 5 hours to get his "STAT" order of morphine from the pharmacy... which I was more than a little annoyed about. There had been a mix up in communication, and so his order had not been filled. Luckily, Jett had not shown signs of pain or discomfort, otherwise momma bear would have gotten very angry. Jett had stayed asleep except for a few whimpers and moans he made. Finally, around 7:15pm Jett got his morphine drip all set up. Knowing that he would be okay, we decided to go back to the RMH and go to bed. We made the nurse promise to call us if he was upset or in ANY pain. I would have gone back to be with him no matter what time it was (and trust me, if I hadn't just had major abdominal surgery and had the chairs in the NICU been more comfortable and accomodating for post-partum mothers, I never would have left his side from the moment he began his stay in Baltimore...)

Jett never did show any signs of pain (monitored by heart rate and breathing) which was an incredible comfort to me. We now had Tage and Mason with us, and so Tuesday Kevin and I took turns at the hospital with Jett. Jett had developed a bad, wet cough, and we were worried about pneumonia. An x-ray ruled pneumonia out. He looked so miserable when he would cough, and we would sit him up and pat his back or the nurse would suction his throat. Thank goodness it wasn't anything serious. We held him a lot, and the doctors and nurses listened for bowel sounds. By the end of the day we heard those sounds, which meant on Wednesday we could start feeding him. Wednesday we began feeding Jett a few ounces every few hours. He was eating and pooping like a champ!

Thursday I was allowed to start breastfeeding him, which I was worried that he wouldn't do. He was almost two weeks old and had never nursed. I was so happy when he had absolutely no problems at all! On Friday we spent the day getting Jett ready for discharge... it took all day long. FINALLY, at 5:30pm, I was once again following behind as my baby was paraded through the halls of the hospital. Only this time we didn't go to the back doors of the emergency room. There was no isolete. No monitors. No tubes. No doors shutting me out and Jett in. No ambulances. No long walk back in the hospital. Instead, we were greeted at the front of the hospital by Kevin, with Tage and Mason in the back seat of the car. Tage was so giddy with excitement as Kevin opened the car door and put Jett in next to her! Mason was equally as excited and kept saying "Hi Baby!" In the cutest high-pitched little voice you have ever heard! For the first time ever, we were all together. Our whole family. All five of us!

Jett, waiting to be discharged

We went back to the RMH and ate dinner and packed our things. While we were thrilled beyond belief to have Jett with us and to have everyone congratulate us and say how cute he was, my heart broke a little for some dear friends we had met while there. We actually met them in the NICU but they also stayed at RMH. The mom, Julie (who is amazing in so many ways... I love her and her family!), and I walked to the hospital or rode the shuttle together when we could. While I knew she was happy for us I also knew it hurt her a little to see us with Jett, out of the hospital and on our way home. Her daughter, sweet little Abby, was still in the NICU, with no end in sight and she desperately wanted (what mother doesn't) to be doing the same thing we were- taking our baby home where he belongs. I am happy to say that they took her home just a few days ago. You can read about Abby here . They could sure use your prayers, as their struggles are still far from over.

Mason and Jett at RMH
Tage and Jett at RMH

It was absolutely wonderful to drive home with three kids in stow! I was so incredibly happy to go to bed that night, only to be woken up an hour and a half later to answer the cries of a little baby who NEEDED me. His mother. And, when anyone asks me now if Jett is letting me sleep much, I say "No, isn't it great?!" Because sleeping through the night when you are supposed to have a baby waking you up a gazillion times is not rockin awesome. Having a baby to force you to peel your eyes open and be sleep deprived is.

Thank you for all of your prayers. Miracles happen! God is good.

Friday, January 7, 2011

The First Two Weeks, Part TWO

I adore this picture!
I should mention that at this point (when Jett was transfered to UMMC) we were obviously distraught that our newborn had just left us in an ambulance, but we were not fully aware of the severity of his situation. Since Frederick didn't have pediatric surgeons, he needed to be transferred to a facility that could meet Jett's needs. I think I was mostly sad that Jett had to be transferred, and not overly worried about his health (although trust me, it was on my mind! And I was praying....really, really hard! Harder than I ever have in my entire life!) I was in denial.

I knew they were suspecting Hirschsprungs Disease, but I still thought that everything would have been SO much better and less emotional if there had been pediatric surgeons here and we had been able to stay local with Jett. For obvious reasons, it would have been easier-- we would have had a place to stay, we could have seen Tage and Mason more, could have gone to be with Jett in shifts, wouldn't have had the emotional departure in the ambulance... etc. But it wasn't until a few days later, when his belly had gone down more than 5cm, that we realized just how distended and at risk he really was. 5cm is A LOT for a newborn.

So.... Jett was transferred Tuesday afternoon on Nov. 2nd. After the ambulance left, Kevin and I realized we couldn't get back into the hospital from the door we had come out of. So, we walked around the hospital, back to the main entrance, and through the main lobby, back into the birthing center, and back to my room... all done in my pjs and socks. Okay, so they were Kevin's pjs, red plaid bottoms and a white shirt, and brown hospital socks... I was a vision of beauty!

When we got to my room, I called for our nurse, who came in and I said we wanted to be discharged immediately. Fastest hospital discharge ever! I was very grateful. We left, and went home. We ate dinner with Tage and Mason (courtsey of some angelic visiting teachers!) packed some bags and left for Baltimore. While at home I called the NICU (a number I would program into my phone and call 1,000 times over the next week) and Jett's nurse talked to me telling me he was there, and was sleeping peacefully. It was relieving to know he was at the hospital safe and sound! And, equally relieving was the surgeon had seen him and had stimulated his rectum to make him poop!

When we got to the hospital and did our 3min srub and then gowned up, we walked into where Jett was. I spotted him immediately, and my heart leapt that he was once again within my line of vision! The UMMC NICU has the babies divided up into different rooms depending on their needs. Jett belonged in the "Surgery" room, since there was a potential for him to need surgery, but there was currently no space there for him, so he was put in the "Extremely Low Birthweight" room. (Which, let me tell you... wow. Seriously heart breaking. I was so thankful that Jett was a "hefty" 7lbs 13oz!) Kevin and I talked to him and touched him lightly, and his nurse came over and talked to us. Jett's skin looked really rough, like they hadn't been lubing him very much, and he was back under a warmer, which didn't help his skin. The nurse said they were lubing him every 4 hours. I was not happy! In Frederick they were doing it every 2. I grabbed the tube of Dermaphor and started giving him a greasing, and we held him.

The resident doctor came in to talk to us, and we told her we wanted him to be lubed every 2 hours and that we didn't want him under a heater. He had proved in Frederick that he was able to maintain his body temp, so being under a heater was not necessary and was wrecking havoc on his skin. I really appreciated the doctor's willingness to consider our opinions concerning Jett's health, and she said she agreed with us, but would check with the attending before she made the changes. We stayed with Jett until almost midnight, and then we left and stayed in a hotel a few blocks away for the night.

The next morning, Jett had a barium enema done, and we spoke with the surgeon. He said the enema had indicated that Hirschsprungs was likely, although not a diagnosis. They had also done a biopsy and those results would not be in until Friday. It was Wednesday. In between his tests and other cares (lubing, diapers, enemas, IV checks, etc) Kevin and I took turns holding him all day. We went home that night, as we couldn't afford to stay in Baltimore all week, plus we felt it was important for Tage and Mason to see us in the morning, since they had barely seen us since the Friday Jett was born).

Thursday morning Tage and Mason were DELIGHTED to see that Mommy and Daddy were home! They were sure starving for our attention! It was wonderful to see them! All I wanted to do was give them 100% of my attention while we were home. I thought about how so often before Tage would ask me to play with her and I would think "hmmm... how can I play with her AND accomplish something else at the same time?" or I would stress all day long about trying to clean and organize the house and be productive. All that mattered now was spending time with them. It was a short amount of time, but we made sure it was QUALITY, and FUN. We got ready and took them to a friend's house, and then went back to Baltimore.

It was almost noon by the time we got up to see Jett. I walked over to his bedside, and saw this:

Hit me with a bat, 3 times, in the stomach. I burst into tears. I knew it was an IV... but still... look at it! He looked miserable! A dermatologist (and his 20 gazillion students) had come to talk see Jett almost at the same time we had arrived. When they left, Jett's nurse apologized profusely that she was not right there when we came in to explain his head. She actually said "it's worse than it looks" but then laughed and said "it's looks worse than it is" Apparently the IV in his hand had blown the night before and the nurses couldn't get one in his other hand or either of his feet, and so as a last resort they attacked his head. As for the tape job.... well, my son is greasy! It takes a lot of tape to keep his tubs and IVs and wires in place. Other nurses who would see Jett would say things (not in front of us, but some of them later became his nurse and confessed) like "Oh my gosh! What happened to that baby? or What's wrong with that baby?" thinking he had some sort of brain surgery. Some would see the IV and say "Holy crap, that's one heck of a tape job!" But then they would learn of his skin condition, and his greasiness, and it would all make sense. I was SO glad to see that IV taken out the next day and sucessfully placed in his hand again.

Thursday afternoon, the surgeon came and told us they had the results. Early. "He has Hirschsprungs" I struggled to maintain my composure. Dr. Strauch went on to explain the plan of action (in detail, he had explained the gist of it before the positive diagnosis, so we were already aware of what Hirschsprung's entailed). He kept asking me if I was okay, all I would do was nod (of course I wasn't OKAY!). The nurse then handed me a box of tissues (Why in the world are hospital tissues so tiny??? Seriously, they only work for the tiniest of sniffles!) He told us a number of times that Jett was going to be okay. One time, he said so confidently "He is going to be okay....(long pause, looked me square in the eyes...) I promise." He probably asked me 10 times if I had any questions, but I just shook my head no. The whole time he was there I didn't say a single word. I couldn't. Bless his heart, he knew I did have a million questions, and told me he would come back the next day.

I was devastated that Jett had a positive diagnosis, and yet relieved that we now had a plan of action. Relieved that there was a treatment. Relieved that the doctors knew how to help him. I felt so blessed to live in a time where medical knowledge is so great! 50 years ago, this diagnosis was lethal. 50 years ago, there was no treatment. It was a painful thought to me that if we were to take Jett home and not provide him with medical care, he would die. We absolutely could not take him home. Death would be a sure thing. But I know God had a plan for Jett. And I know it was His hand that had protected him in the womb. I know that our loving Father in Heaven provided Jett with the EXACT care he needed all along the way. There were no mistakes. Every nurse and Doctor that saw Jett did exactly the things that Jett needed.

That night, we left later than we expected to. Jett started fussing just as we were getting ready to leave, and well, we just couldn't leave him sad. Until that evening, he had been very peaceful, only letting out little wimpers that were easily soothed with a pacifier. But that night, he was screaming! I called the hospital a lot that night, just to make sure he was sleeping peacefully. It broke my heart to leave him there every night. I wanted so badly to soothe his every cry. I knew the nurses would take care of him, but they had other babies to take care of too. The thought of him crying by himself, with no one there to hold him and snuggle him until he calmed down tore me apart. Oh how I wanted Jett sleeping in his bassinet next to my bed! I desperately wanted to be woken up at all hours of the night by my baby! And, although I knew God was in control, and I had felt the peace and comfort of my Savior many times, I sometimes wondered if I would ever have him at my bedside. I had felt peace, but was confused as to what that peace meant. I wondered if we would ever bring him home. I know, it's a terrible thought to think, and I really did have faith that he would be okay. But when your newborn is scheduled to have major surgery to save his life, you can't help but be terrified that something might go wrong. I tried to push those thoughts away and not "waver" but the fear was still there. The next day I asked Kevin if he thought we would get to bring Jett home, and he looked at me, shocked that I had considered the alternative, and said "Yes. I really do. We will bring him home." (Ahhh... thank you Kevin! Thank you for being strong! I love you!)

(The weekend, Ronald McDonald House, and Jett's Surgery in part 3! Sorry to keep you in suspense... it's a very long story, and I want to include every detail and don't ever have time to write it all in one sitting!)

Friday, December 31, 2010

The First Two Weeks Part ONE

Things are settling down, now that Jett is home and healthy and the holidays and craze that come with them have come and gone. Finally, I am getting around to writing about our INSANE experience!

How it all began

As you know, my pregnancy was high risk with the membrane and all, and so from July-August I saw the Perinatologist every two weeks, and then every week around September. Our stress and worry had eased quite a bit with each visit being uneventful (meaning no further complications with the baby). And we were begining to make preparations for scheduling a c-section.

- as a side note, I had a lot of anxiety over whether a c-section was really necessary, and seriously did not want to have one. There was a lot of medical curiosity involved (from doctor's perspectives) and I wondered if they were pushing the c-section so they could have the thrill of seeing the membrane and have a better "view". I talked to the doctor's about it a lot, and the perinatologist explained things really well, and told me I had the option not to do a c-section, that it very well may not be necessary, but that we wouldn't know until after delivery. Anyways, I never would have been able to forgive myself if I chose not to do the c-section and something happened... like strangulation by the membrane. even though c-sections really do suck)

The Appointment

So October 29th comes and I go to my 37week appointment at 1:30pm. The tech starts scanning and what do you know.... No fluid! Dr. Kramer (Perinatologist) comes in and says in his awesomest South African accent "Ashley, I know when you're having that baby! Today! It's over. This has been the longest pregnancy ever! I can't believe it, congratulations. Go to the hospital." I asked if I could go home first, and he said absolutely not. So.... I went home. (HELLO! I was not about to have a baby without my camera! Plus Mason was in the middle of a medical test that he needed a final dose of Activated Charcoal in an hour and there was no way I was going to repeat that test... have you ever tried to give a 20month old activated charcoal? It is not fun. Or pretty. It's a mess. We strip him down to his diap. And he gets covered in it's black nastiness. And so do I. And so does Kevin. And so does the kitchen. And don't get me started about the bucket of poo we'd been collecting...)

I met Kevin at home, and grabbed a few things for the hospital, plus the kid's Halloween costumes for the Trunk-or Treat party that night, and went to our friend's house to tell the kids their brother was coming that night! Yay!


Okay, fast forward to the hospital (I can't believe I've written this much and still haven't gotten to his birth! Have I said this will be long? Cause this will be long!) I had an awesome nurse who we told our hesitations of naming our baby Jett. She said she named her kids all plain Jane names until her last one. They named him Bucky.

The OR experience was so strange. Being on the table, tube in nose, cap on head... can't feel a thing, except you can (you know what I mean fellow c-sectioners). And then the Anestisologist tells Kevin to start shooting pictures, and next thing I know I hear the cry of my precious child! A HUGE sense of relief comes over me, as they declare him as "perfect." He had escaped the dangers of the membrane, and had all his fingers and toes. I caught a few glimpses of him, but it felt like forever before they finally wrapped him up and brought him around were I could see him better. And then they took him to the nursery... and everything became a blur for the next 24 hours ish.

After Delivery

I was loopy. It took over 3 hours before I could wiggle my toes (they told me one hour!) and I was throwing up every 10 minutes, which also happened to be how often they would come push on my stomach. And they asked if I wanted to try to nurse my baby... I said no. Kevin gave him a bottle in the nursery. Let me tell you, that's how miserable I was. If you'd asked me before I would have said "I will most definitely nurse my baby. There is NO WAY he will have a bottle. I will nurse. It doesn't matter how terrrible I feel, I will suck it up and I WILL NURSE HIM!" But I didn't say that. I didn't even hesitate to say "no." I knew I couldn't do it, and I didn't want my baby to be hungry, so I let him have a bottle.

At some point I was moved to my room. And nurses talked to me. And doctors talked. And I fell asleep. And the nurse brought the baby (remember, he still doesn't have a name) in. And told me he was having a tough time keeping his temperature. And I tried to nurse him. He wouldn't latch. And so I just held him. For a few minutes. And I fell asleep again. And the nurse took him back to the nursery. And I snoozed on.

Jett Goes to the NICU
(click images to see in larger size)

It was the middle of the night by now, and the nurse came in several times to check on me and tell me I wasn't breathing very well (I did not remember this detail until a few nights later when she reminded me of it.) Apparently she was hovering over me, wondering if I was going to take another breath. I was only taking about 7 or 8 every minute. She concluded I was okay, since I would carry on a conversation with her if she talked to me. I don't know what we talked about! Then she came in again, and told me the doctor would be in to talk to us, but that she wanted me to know our baby was in the NICU because he wasn't keeping his temperature and his left leg was a little swollen.

Next thing I know, the lights in our room are on (SOOOO BRIGHT for drugged up eyes!) and the Neonatologist is in there telling us something about our baby... in the NICU... swollen... cold... skin... I honestly can't remember most of what she said. I just caught the jist that he was "okay" and I kep thinking "I have to close my eyes. I hope she doesn't think I'm a bad mom, or that I don't care about my baby because I have my eyes closed. I know it looks like I'm sleeping, but I'm not. I'm eyes are just closed."

Kevin went the next morning to the NICU by himself. He cried.

It wasn't until after 10am that I finally made it to the NICU. Kevin wheeled me there, and I closed my eyes. And asked for a bin. And stood by my baby for about 2 minutes. And sat back down. The Neonatologist (a different one) Dr. Miller, came to talk to us. She pointed out our baby's skin. The redness, the peeling, the cracks. And diagnosed him with Ichthyosis. And the nurse handed me a box of tissues. And I cried. And I felt sick again. And then we left. And I puked on the ride back to my room.

I made it up to the NICU several more times that day, and tried unsuccessfully to nurse him. He would take a bottle though. His stomach started to become distended, but x-rays showed nothing. Just air. By now he had a tube in is nose, and the nurses would periodically suck air out of his belly.

Tage and Mason came to meet their new brother, I didn't go with them, but Kevin took them in individually to see him. Mason kept pointing to his tube and said "Bebe...owie..."

When Sunday came, I had a melt down. I bawled my eyes out to Kevin that our baby was in the NICU and I couldn't nurse him, he wasn't sleeping next to me, we weren't going to be taking him home on Monday, and I didn't even know what to call him. He STILL didn't have a name! And that's when we decided on Jett Thomas.

Sunday and Monday were pretty much the same health wise for Jett. He was lubed every few hours with globs of Aquaphor, the doctors were still concerned about his risk of infection from his skin being so raw, he wasn't nursing, and he wasn't super interested in a bottle but he could be convinced to take it. His belly was still distended but it was still believed he was just swallowing a lot of air. Monday he wasn't pooping very well, so he was given a suppository, and that worked like a charm.

Jett's Health Becomes Critical

And then Tuesday came. Oh, Tuesday. Kevin went to do a delivery in the morning for the courier he works for. He would be back at 11:30am. I was going to be discharged that day. Jett was not. I was struggling with that. I didn't want to go home without him. I walked over to the NICU for his 9am feeding. Once again, he wouldn't latch. I tried to give him a bottle. He wouldn't take it. So, we fed it through his tube. I went back to my room, pumped, and then returned again at 11am, to try to nurse him yet again.

When I walked in, Dr. Miller came to talk to me immediately. Little did I know she was about to hit me with a ton of bricks. Jett had not pooped in over 12 hours. He'd had 2 suppositories. Neither of them had come out. His stomach was extremely distended. Dr. Miller suspected Jett had Hirschsprung's Disease, but the only way it can be definitevly diagnosed is by a rectal biopsy, which must be done by Pediatric Surgeons. The hospital we were at doesn't have Ped. Surges. They were calling an Emergency Transport Team to take Jett to the University of Maryland Med Center in Baltimore.

I was trying to understand it all, and take it all in, and I started to cry. Then the nurse handed me a box of tissues. And then I really cried. They needed to change Jett's tube to a bigger size and do a few other things to prep him for his departure, and told me to they would phone my room when they were finished. I went back and called Kevin... he was in the parking lot of the hospital. I told him. He came into my room and we both cried. Hard.

Jett Takes a Trip

When we were told we could come back to be by Jett, we did. His new, bigger tube was used to suction anything and everything out of his stomach. His stomach was so distended, he was at risk of rupturing his colon. We sat next to him for about an hour, he moaned a lot and looked extremely uncomfortable. We wanted the team to be there immediately, so that Jett could get the help he needed.

It was interesting... being there. In the NICU, next to Jett. Up until then, Jett seemed very healthy, other than his skin and his distended belly they wanted to keep an eye on. The other babies in the NICU were so tiny, so fragile. Jett was the biggest baby there, weighing in at 7lbs 13oz! I had felt like we were in a better position than other parents there. And then, suddenly, we were the center of attention. Jett had the most critical needs at that moment. Other parents were looking at us with sorry eyes, glad they weren't in our shoes.

And then, I heard the transport team come in and I cried...a lot. They put Jett in a little isolette, talked to the doctor, talked to us, got his medical records, and then left. We walked behind them as we paraded through down the halls, through the MAIN LOBBY, and down past the ER and then outside to where the ambulance was waiting. And it was awful. I could feel everyone watching. I could hear people talk, say "ohhh" and " (gasp) look at that little baby" a few nurses gently touched my shoulder as we walked by and said "good luck". I know everyone genuinely felt sorry for us, but it was really a weird feeling to have such a private and emotional moment be so public and open for all to see.

Just before the EMT closed the doors to the ambulance, one of them stuck his head out and reassuringly said "we'll see you there." and then Kevin and I watched them drive away, takin our hearts with them. And we bawled. And Kevin held me. We then walked back into the hospital, back through the main lobby... this time without a baby. It was awful.

To be continued....

Friday, November 26, 2010

Monday, November 15, 2010

Welcome Home Jett!

We are THRILLED that we were able to bring Jett home Friday night. Such a blessing to have our family all together! Jett is doing wonderfully, he is such a strong little boy!